Community for the chronically ill

Chronic Lyme disease

I know you’re thinking “she doesn’t look sick”. But I really don’t even know where to begin because this has been a part of my life since I can remember. My mom noticed when I was younger that I would have facial tics. This is where you can’t control the muscles in your face and they just move on their own. When I got older I started having severe muscle spasms throughout my body. This is when I was about maybe 6 or 7 years old. When I started going through puberty it got even worse. I was always sick as a kid and doctors would always just tell my mom that I’m a kid and I’m just making it up. When you’re that young you even start to believe the doctors and just try to live your life normally but that was never my case. I was alone for a very long time and no one would believe me not even my own family and friends.

By the age of 13 my body would have uncontrollable muscle spasms and verbal spasms as well. So test after test after test and nothing would come up. Many vials of blood were taken. Many different Specialists were seen. I have had so many MRIs, CAT scans, EKGs, EEGs, and so much more done as a child. I was just always sick. But the older I got the more crazy the doctors thought I was. They even decided to tell me i was epileptic and Tourette’s. When I was 15 I had a severe seizure at school. To me these seizures are just uncontrollable muscle spasms and it feels like someone is electrocuting your whole entire body and you can’t control it. We went straight to the neurologist and they did an MRI. All I can remember is them telling me to stop moving and I could just remember yelling at them I can’t.

After having my son, who also needs to be tested and possibly treated for Lyme, I lived with severe vertigo, constant migraines, and just overall pain everyday. There are good days and bad days but mainly bad days. I lost many jobs because of this invisible disease. They still to this day can’t seem to find anything wrong and what’s causing these seizures. It wasn’t until I was 23 years old when I found out I had Lyme disease. I was working at my old job driving rental cars and something unexpected happened. My whole right face started drooping and I couldn’t control my face any longer. I started having my seizures but because I was driving I forced myself to focus until I got to a safe place. Then my wife, who at the time was my girlfriend, came and picked me up and took me to St. Mary’s Medical Hospital. They wouldn’t see me for a while and I even told the doctors it seemed like I was having Bell’s palsy. The doctor kept insisting no it’s not Bell’s palsy it’s something else and then proceeded to give me a muscle relaxer after I told them I was not allowed to have that because of my heart condition. I started to feel really sick at this point and they realized I wasn’t knocked out yet. So they then proceeded to shoot me up again with something else and told us that it was just more muscle relaxers.

Come to find out they thought I was schizophrenic and gave me a high dosage of Ativan & Chlorpromazine. They then filled a script for me to take at home called Thorazine. After the last dosage they gave me through my butt I knocked out and my heart stopped. I didn’t wake up for another 3 days in my home. And from then on I have had nothing but horrible blackouts. I decided to go back to the neurologist and make sure everything was okay. That is when he decided to tell me my blood results came back and showed positive for Lyme disease but not to worry because it’s not a real disease. He then proceeded to tell me that I needed to go to the University of Miami and live in a glass box for two weeks to be studied on because they cannot figure out why I have these so-called seizures.

That is when I took matters into my own hands and looked up Lyme disease. Never saw that neurologist again let me tell you that. It’s very hard to find a Lyme doctor in Florida. But my mom somehow found a doctor for me to go speak to. Most doctors lose their practice or their license because they help people like me. These doctors cannot take insurance so everything is out of pocket. I paid $700 for me to sit with a Lyme doctor for 3 hours. This doesn’t even include the blood testing that needs to be done and that costs an arm and a leg. You want to know about medications? I haven’t even gotten that far because of how expensive everything is. I just try to live my life as normal as I can and be healthy. I’m hoping to go to Jacksonville soon to get the rest of the help that I need. Until then this is my story and it’s still being written.

My Symptoms:

-Uncontrollable muscle spasms

-Facial tics

-Vertigo

-Severe migraines

-Heart palpitations

-Blackouts

-Numbness in my fingers and toes and even sometimes legs

-Severe pain throughout my whole body

-Feels like someone is electrocuting my spine

-Unable to with stand too much heat or cold

-Anemic

-Vitamin waster

-Memory Loss

-Constant confusion

This is just a small list of things I live with on a daily basis….I hope my story can help many others that are being told they are crazy or nothing is wrong with them. Don’t ever fall into a depression because of someone with a Dr. degree is telling you you’re making it up. Because there are so many others with you. I am someone who lives with Chronic Lyme Disease and may never have a different life but that wont stop me from living my life. Never give up. Ill keep you all posted once i go to Jacksonville!

Dysautonomia (“Dys” from the Greek word for bad or malformed and “Autonomia” referring to the body’s autonomic nervous system (ANS)) is an umbrella term referring to a failure of the sympathetic or parasympathetic parts of the autonomic nervous system (ANS). It may also refer to an overactive ANS. The ANS is what controls the involuntary functions of the body. It affects the nerves, which carry information from the brain to the rest of the automatic nervous system, including the heart, blood vessels, bladder and sweat glands.

Dysautonomia can cause problems within the heart, affecting heart rate, body temperature and blood pressure. It is often a secondary symptom of other chronic illnesses. Some dysautonomia conditions are reversible however, many conditions, such as co-morbidity with Parkinson’s disease are not. It may affect a local area of the body, or be more generalized throughout the body.

Dysautonomia affects over one million Americans and close to 70 million people worldwide. It affects both men and women. Despite its prevalence, dysautonomia may take a long time to be diagnosed due to the lack of awareness among patients and physicians. It is an “invisible” disease, as symptoms occur within the body. Often symptoms are more observable after the patient is exposed to heat, anxiety, or physical activity.

Causes

Dysautonomia can occur due to injury of the ANS from another disorder, and may be genetic. It may also be caused by exposure to toxic chemicals, trauma or a viral illness. Some of the diseases that may cause dysautonomia are:

Symptoms and Diagnosis

To diagnose dysautonomia, the physician will test the functionality of the ANS, especially on the organs that are affected. Tests will likely include measuring blood pressure and heart rate in several positions, using a tilt table, sweat testing, and deep breathing.
Common symptoms of dysautonomia are fatigue, impotence in men, faintness upon standing, rapid pulse rate with exertion, weakness, dry mouth, cognitive impairment, orthostatic hypotension, urinary incontinence, and constipation.

Treatment and Management

While there is generally no cure for dysautonomia, treatment of the co-morbid illnesses may be beneficial in reduction of the symptoms. Medications may be used to treat the individual symptoms of dysautonomia, such as controlling blood glucose and using medication to treat acid-reflux, or giving injections of botulinum toxin type A to manage hyperhidrosis (excessive sweating). Other management measures can include elevating the head of the bed, and adding a high-salt diet and other lifestyle changes. Taking cooler showers, standing slowly from a sitting position and other postural changes may help.

Prognosis

Depending on the cause of dysautonomia in the individual, prognosis can vary.

What exactly is Chronic Lyme Disease?

Lyme disease is a bacterial infection that is caused by Borrelia burgdorferi bacteria. The majority of cases have been caused by black legged ticks or deer ticks. The patient is bitten and the bacteria carrying tick will infect the patient with chronic Lyme disease.

http://www.healthline.com/health/lyme-disease-chronic-persistent

Symptoms of Chronic Lyme Disease

The patient will soon experience some of the common chronic Lyme diseases in the early stages such as: stiff neck, fever, fatigue, joint pain and muscle aches. The patient may also have rashes around the the bitten area, most notably the bulls-eye rash. In some extreme cases, the patients may have nerve problems and arthritis.

How is Lyme Disease Transmitted?

Lyme disease is mainly transmitted by the bite from a specific tick. The animals that transmit these insects are mice, deer, black legged ticks and raccoons.

http://www.webmd.com/rheumatoid-arthritis/arthritis-lyme-disease

Risk Factors for Chronic Lyme Disease

Chronic lyme disease is also termed as “post lyme disease syndrome” and because of its lingering affects there are certain risk factors. If it is not treated properly or ignored the symptoms then the disease will progress to a stage where the effects might last even for years after the initial tick bite.

Effective Ways To Treat Lyme Disease

If symptoms are recognized early, then the patient may be cured with antibiotics; the sooner the medications are given, the better. If the patient is less than 9 years of age or a pregnant woman then amoxicillin or penicillin is prescribed by the doctor. If the symptoms are not showing any signs of stopping then patients might need internal cardiac pacemaker because they might have a chance to experience long term heart damage.

Complications of Chronic Lyme Disease

Chronic Lyme Disease may severely affect the patients mobility and cognitive skills. They need to learn how to manage their extreme lifestyle changes and emotional stress as well. Patients should not lose their hopes quickly and should consult their doctors about remedies and therapy.

Diagnosis of Lyme Disease

Lyme disease is generally tested with a blood test and checks the antibodies to the bacteria that is causing the disease. The ELISA test is the most effective diagnosis for lyme disease. Other diagnosis including spinal tap where the spinal fluid is ejaculated from the spinal canal for testing.

How to Prevent Lyme Disease.

Prevention is always better than having to cure. It’s better to use insect repellant when you are going to wooded or grassy areas or wet pitches. You should avoid high grasses while hiking and changing clothes after hiking is also a good idea. If you are a pet owner then you should always check your pets for ticks every once in a while and clean them as well.

Remove the tick if you notice it immediately. You must remove it with the help of hair pin or tweezers and detach it completely. Buy a tick removal kit before your trip or night out for safety measures. If the tick is removed then you can be in your comfort zone. Do not squeeze the tick as it will “vomit” into your skin.

Where is Chronic Lyme Disease Spreading?

Chronic Lyme disease is reported in all 50 US states and more than 65 countries worldwide. Lyme disease was first discovered in England and since then it has been expanding throughout the world. WHO is constantly working for a effective medications for it.

Hello, I’m new to this community and this might sound strange but after reading several of the post on here I finally don’t feel alone. I can’t thank you guys enough for sharing how you feel and having this private group.

I have all kinds of family and I’m a mother and I have a kind and loving fiancé who literally takes care of me but I still feel like people just don’t get it. And sometimes I think they actually forget I’m always in pain.

I was diagnosed with what they called a severe case of Fibromyalgia, and Chroniuc Lyme disease. Two years ago I was me! I was a dance coach, and an entrepreneur of a wedding and event company. I’m a free spirit kind of girl so being a Dance Coach for the local school district Monday-Friday and an ordained minister and event planner on weekends was my cup of tea.
I ran three to five miles a day and swam in Lake Michigan every single day (weather permitting) for no less than 40 min. Then one night in the middle of the night my legs started to spasm and my body was having trimmers.

It felt like my bones were detaching from my muscle. It was excruciating. The ER Doctor was stumped and said he could see the muscle moving with his own eyes but couldn’t tell me why it was happening.

Since then it’s been a min by min struggle. Every single day I’m in pain. Some days are better than others but everyday is painful. I go months on end were my legs, hips, back and shoulders just won’t carry me.

Most days I’m swollen head to toe, sometimes the swelling is random. I have nausea all the time so I’ve lost 30 lbs just from that and the stomach pains.

I can’t even touch my shins because they hurt that bad. Every once and a while I can get up and walk slowly and carefully but mostly if I need to pee someone has to physically put me in my wheelchair and push me and place me on the toilet ( so humiliating ).

This is not me! I feel like I can say this to you guys because you get it, but I feel like I am alone even though I’m surrounded by family and love. I’m always tired like crazy stupid tired. How does someone who has ADD & ADHD become so fatigued all the time. I don’t let my kids see me cry and they are always helping out and asking how I feel. I love my life but I hate this person I’ve been forced to be. I feel like my soul is a prisoner in this shell of a body just dying to get out and be me.